The Patient as the Fundamental Why: Breaking Down the Reason for Social Media

flickr: miamism

Every once in a while, a book comes along that causes you to rethink something fundamental—your relationships, your profession, your choices, your goals. I’ve had the pleasure to be reading a book lately that has caused me to reevaluate all those things.

The Emperor of All Maladies: A Biography of Cancer, written by Siddhartha Mukherjee, has left me heartbroken and in tears, has found me slack-jawed in awe more times than I can count, and has reinforced both the fundamental majesty and impotence of humankind. I feel richer in experience simply for having hungrily digested its research and stories.

Mukherjee is a cancer physician and researcher. The book is obviously born out of a deep passion for his profession and, more importantly, a deep love for his patients. Although he is a Rhodes Scholar who graduated from Stanford, Oxford, and Harvard, it is his compassion that often outshines his intellect. He cares deeply about the history of this devastating disease because he has absorbed how vastly it has cost human life and relationships.

For me, this has been the overarching lesson of the text—that, ultimately, the reason why healthcare is important is because of patients. At the end of the day, despite stimulating research, technological advances, business considerations, and every other motive for practicing medicine, the patient is left as the fundamental reason why this large, multi-faceted entity exists. And, it is my firm belief that social media can push this reason to the forefront.

Kelly, our Social Media Mentor, wrote a blog last Friday about how patients are the best advocates in social media. I would like to take her idea even further and say that patients are the reason for social media. On days that blog-writing or Facebook monitoring or video-creating or tweeting seem tedious or impossible or not a priority, Mukherjee reminds us why we do any of it in the first place.

He introduces a patient, Carla, in the prologue of his book. She is “a thirty-year-old kindergarten teacher from Ipswich, Massachusetts, a mother of three young children,” who is diagnosed with acute lymphoblastic leukemia. Time and time again, in between chapters on the discoveries of chemotherapy and radiation, the link between smoking and lung cancer, the creation of the American Cancer Society, and much more fascinating history, Mukherjee returns to Carla—to her diagnosis, to the effect on her family, to her brutal chemotherapy regimen.

I don’t think it’s an accident of structure that makes Carla the connecting thread of the book. Mukherjee is consistently reinforcing that this is why we care about cancer; it is the human experience, the human cost, that drives us.

It may be that the idea for social media in your hospital was born out of a desire to keep up with the Joneses. It may be that it was seen as an important tool in your marketing mix. But, hopefully, it was also seen as a tool for sharing voices—the voices of human beings (physicians, patients, families, researchers, administrators) struggling with the all-too-earthly experience of accidents and disease.

An exciting aspect of The Emperor of All Maladies was how often someone on the fringes made the important discovery—how a solitary voice made all the difference. Social media is all about bringing forward the individual voice. It is all about leveraging the wisdom of one into the experiences of many. Another blog Kelly wrote lately, about inspirational blogs by patients and their families, physicians, and hospital CEOs, captured a small number of those voices. I, for one, read Grady Doctor and Seattle Mama Doc every day, along with several others Kelly mentioned. In the end, I read them for their humanity above all else.

So, I suppose my blog today is a sort of plea. To remember, as you embark upon or continue your hospital social media efforts, that patients are the why in all of this.

(Listen to Terry Gross interview Siddhartha Mukherjee and read an excerpt of the book here.)

3 replies
  1. Megan Pugmire, Creative Director
    Megan Pugmire, Creative Director says:

    Thank you, Stacey and Michael. I really recommend reading the book, Michael, because Dr. Mukherjee outlines how information sharing (from patients and physicians alike) led to a much greater understanding of cancer, and how cancer care evolved to take patient needs into better consideration. I hope we can continue this discussion!

    Reply
  2. Michael Weiss
    Michael Weiss says:

    I cannot agree with you more that Health Care Social Media is a Patient-Driven Medium. Moreover, I compare its potential to the “Fan Communities” created by the Band “The Grateful Dead” when they started using “Social Media” but without Technology years ago when they encouraged Fans to Tape their Shows and share them with one another. THAT is the “model” for Patients in Social Media. Medical Professionals are limited by Licensure Rules and Regulations but Patients are only constrained by their own sense of Privacy. The more Candid the Patient the better the growing Database of Patient Information and Experiences that is essentially an Instantaneous Database available Globally to ALL Patients. I wrote about this in detail on my Blog at http://theprofessionalpatientblog.blogspot.com/2011/03/health-care-social-media-patient-driven.html GREAT JOB in this Entry by YOU. Kudos.

    Reply

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